OraSure false positives, cont'd.

So I write to the editor of the New Mexico Voice (the fag rag in this part of the state) from time to time saying thanks for this and that and here's an idea for a story and do you know what's up with so and so because as far as I can tell gossip is the glue of gay community.

She writes back, I write her back, she writes back yet again and basically says sure she'll publish a letter to the editor or op-ed about false positives from someone who tested false positive just try and keep it to around about 700 words though that's a little flexible not set in stone and all of that. So hopefully she won't freak out to see this here before she prints it since the Voice does print news stories that they find online (though this is strictly editorial), which is how I found out about the OraSure false positives in New York and San Francisco the first place, my posting this here just being my attempt to make it all sort of come full circle. Besides which I've only got three or four regular readers, which is a good thing, and none of them in Albuquerque, which is a great thing, since I'd be afraid to write if anyone now living here read anything I wrote.

But I do want to get this out where it can get found by whoever else may be searching the web for ohhh I dunno "OraSure" or "OraQuick" or "false positive" or "oral swab HIV test" just as soon as possible, before the FDA rubber-stamps approval for home use of this seriously flawed test that's turning up false positives right and left in clinical settings around the country and must absolutely not be sold at Walgreens to closet cases of a zillion stripes and shades so they can ruin their lives thinking they're positive when they are not. And HOW DARE THEY blame the victim, suggesting that there's something wrong not with the test but with guys getting tested in New York and San Francisco. Fuck you, OraSure. I tested false positive in ALBUQUERQUE way back in 2004, a fucking YEAR before it made the news. Oh yes we are indeed a valuable market to be tapped but DO NOT FUCK WITH US playing your little heterosexist power and control games.

Here's the letter I sent her. It is *exactly* 700 words:

The U.S. Food and Drug Administration is considering approving over-the-counter sales of "OraQuick" HIV tests for home use. This is a very bad idea. I speak from personal experience.

In 2004, I got tested for HIV at NMAS. Despite my being ill, the testing counsellor put me at ease. The oral swab test was painless. What followed was not.

Two weeks later, I was told I had contracted HIV. I gave first names and phone numbers for several sexual contacts. I qualified for Ryan White Act funds. The next day blood was drawn at the clinic next door, and I nearly fainted. I only "came to" because if I went down, I believed, I might never get back up. I didn't know how far the disease had progressed; I only knew that I was very sick.

I felt comfortable enough knowing the expert staff at NMAS and the clinic were handling my case that I did nothing rash in the difficult week which followed. Knowing nothing better to do, I followed their advice, by default. I did not commit suicide. I told no one that I was HIV+, and didn't have to deal with their reactions. I neither drank nor drugged over my results, knowing I'd need whatever cash I had. I continued working graveyard full time, making thousands of tortillas.

I did buy cards for those I loved, ceased having unsafe sex, and winced at every cough and sneeze in my vicinity.

Time telescoped. Minutes lasted for hours, hours for days. In a glum mood seven days later, I heard a voicemail from someone at NMAS informing me that there was a mistake, and while he hated to tell me by voicemail, the protocols said he had to make telephone contact. "Great", I thought. "It isn't HIV, it's full-blown AIDS". I was wrong.

I had tested false positive.

Less than half an hour later, he came by with the woman who'd tested me and showed me my results. My EIA was reactive; my Western Blot was nonreactive. I still needed to retrieve results from my blood work, but they'd talked with the clinic and there were no traces of HIV antibodies in my blood. I still couldn't believe it, even with my T-cells counting in at a healthy 1052. I "knew" I had HIV; being told otherwise drained me emotionally. The earth itself fell out from underneath me. Nothing seemed real.

I lost the Ryan White Act funds for which I had initially qualified. A few weeks later, a bill for $1,003 came from UNM Hospitals for the confirmatory blood work. I couldn't cover it. It wound up being paid for by indigence funds.

Had I received the same results testing myself at home, none of the safeguards which saved my life and finances would have been in place. I would have lacked the calm, experienced, professional, and face-to-face advice that told me not to take anything fast. I would have quit my job. I would have told friends and loved ones, causing preventable but meaningless pain and suffering. I might have visited the bookstores, angry at the world, where I might actually pick up the virus, spreading it further before I even got my true results -- which by the time I did, might no longer be true. And when I finally learned I didn't have HIV, assuming I survived that long without contracting it, I would have faced financial devastation from confirmatory tests.

Imperfect as they are, I'm glad that oral swab tests for HIV exist. (I would never have tested at all, if all testing involved drawing blood.) However: they must be professionally administered in clinical settings. Any person testing positive -- false or true -- needs support immediately accessible when hearing their results.

Any person who will only test for HIV at home is dangerously isolated to begin with. I was not alone. I was extremely lucky. It was still hard.

In the interests of public health and safety, the FDA should deny OraSure Technologies' request, because exceptionally high percentages of false positives resulting from use of the OraQuick test in controlled clinical settings make it wholly unsuitable for home use.